Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, December 23, 2008

Looking back: Christmas 2006

I keep looking back and remembering college to avoid looking back at where I was at this point two years ago.
TWO YEARS! That sounds like such a long time to me. You have to know, I seem to have time commitment issues. I did graduate with a bachelor’s degree in nursing in 3 years (I actually matriculated and graduated in 2.5 years). I would have graduated from high school in 3 years if I wasn’t a soccer player. I really do not play well within restricted schools of thought.
I need my experience and then I need to move on, but my cancer just keeps going and going and going.
So, due to what happened two years ago, I fear Christmas for X is irreparably damaged and associated with feelings of anxiety over the possible loss of me.
At three, I was hospitalized for the first Christmas season he remembers. I had been undergoing chemotherapy treatment since September to prep myself into remission for the transplant from my sister’s marrow.
I would get into remission, then reoccur before I was healthy enough to move on. I had been plagued with serious health problems for the month previously.
My downfall was a regimen called “mini-beam,” which leaves you feeling well immediately after, but later presents its symptoms.
I must have missed this part of the teachings because when I left the hospital, I felt great and it was Christmas time.
I brought Xander to Santa’s Land where he rode the rides and played. We went out to pizza. We cleaned the basement so we could play basketball and baseball during the winter.
Then the Monday before Christmas I started to not feel so well. I was seen and given something. The following day it got worse, I called my NP but said it wasn’t necessary to be seen. On Weds. I spiked a fever and dragged myself to the ER.
At the ER all hell broke loose. I will spare you the details.
I needed blood transfusions, platelet transfusions, antibiotics, and morphine for the pain, A LOT OF MORPHINE.
My parotid glands swelled to a point so painful I couldn’t swallow. My abdomen swelled to a point bowel surgery was spoken about. I had nystagmus, an ominous sign of neurological involvement. I took so many pain meds I couldn’t hold a conversation but could scream in pain and ask why my patient controlled analgesa (PCA) was not working.
It was not working since it was set to dispose 2mg of morphine every 5 minutes and my pain resumed at 2 or 3 minutes.
I couldn’t/wouldn’t move. I think this was almost the most miserable I have ever been. It was not the point which I was most scared for my life. That was reserved for later when my lungs failed.
Either way, X came to visit me Christmas Eve. By this point, I had spent months in the hospital. I had spent more time as an inpatient than I had at home with him.
He walked up to me, held my hand, and told me sweetly, “You can spend the night at my house if you want to.”
My son invited me, on Christmas eve, to a sleepover, at “his house,” which was actually “our house,” except I hadn’t lived there for months. He didn’t remember me as a mother who had ever lived with him.
I tried to explain why I wouldn’t be spending the night, and he nodded in compliance with my decision.
When my family left, I hollered for my meds, and cried for as long as I stayed awake.
This was the first time I had ever had my heart broken.
On Christmas Day, I was allowed to sign myself out with a waiver to spend time with my family at home. The waiver stated it was not recommended I leave and I understood that I would be responsible for myself.
Thanks to some wonderful doctors and nurses at DHMC, I was able to spend a couple hours at home.
I thought, “What’s one Christmas in the greater scheme of things?” X may not even remember.
I don’t know why I need to tell this now. My writings are as much of a diary and confessional as they are for the greater good and comfort of others. Looking back, this was one of the worst experiences I have ever gone through.
However, like I tend to do, I recovered from my symptoms and the health problems I experienced, and to my knowledge, these happenings were never entirely explained.
I belong to the “who cares” category of thinkers about situations like these. As long as I recovered, it doesn’t matter how it happened.
We all know a little bit about how the story as gone since that evening. Please pray or remember those all over the world who can not be with their families this holiday season.

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